Eating Disorders: ‘I could never end up like that’

Words by Ali Sipahi. Header image via.

I don’t know about you and your mates, but in my group of friends, our personal mental health problems make for some great banter. Most of us share some kind of mixed anxiety/depression presentation, and there’s always room for a few self-deprecating gags about how we couldn’t get out of bed that morning or how we fucked up some kind of social situation by overthinking it as a result of our poor self-esteem. Hahaha, classic.

But then, I go and spoil it all by saying something stupid about my eating disorder. It doesn’t matter which group it is – from friends to family to long-term partner – you can hear the tumbleweeds. Seriously, it’s very rare that I find somebody who laughs at jokes about my eating disorder; I would know, because I’ve been leaning on humour as a crutch for a lifetime. Nothing is guaranteed to garner an awkward cough more than dropping a gag about binge eating or the crippling anxiety of calorie counting.

Since I’m not necessarily interested in making my loved ones uncomfortable for the sake of a laugh, I’ve learnt my lesson and tend not to make these jokes anymore. But what does it say about what we know about eating disorders if even the most mentally unhealthy of my friends don’t know what to say in return? What does it mean when, anytime I tell somebody I have an eating disorder, 80% of the time I’m bound to hear the classic, nails-on-chalkboard response of “but you’re so thin!”

I don’t think I’d be being dramatic in suggesting that eating disorders are a misunderstood condition for those members of the population who are without one. We’ve all seen the 60 Minutes specials about women – almost always anorexia nervosa, and their shockingly, painfully thin bodies. We’ve gaped at the incongruences of what we know of eating and bodies and how this woman looks: we could simply never end up like that. But what do we know of the cases that get left behind; the ones who can’t lose enough weight for admission to an inpatient ward, the ones who never seek help because it never seemed bad enough for treatment, the ones who fit into a normal weight range (or are overweight) and are embarrassed to speak up?

While you’ve got diagnoses of anorexia nervosa, bulimia nervosa and binge eating disorder in the DSM-5 (Diagnostic and Statistical Manual of Mental Disorders, 5th edition), you’ve also got the recently introduced 'Other specified feeding or eating disorders', which include atypical anorexia nervosa, where affected individuals meet all the criteria for a diagnosis of anorexia nervosa except they don’t satisfy the weight criterion – despite losing some weight, they are still in a ‘normal’ weight range and don’t fit the mould of what society understands anorexia to be. Interestingly enough, these ‘other specified’ conditions (formerly called 'Eating disorder not otherwise specified', or ‘EDNOS’ in previous editions) were created to study unusual cases. Now, they tend to account for around half of the cases seen in clinics.

I’ve had an eating disorder for just on 10 years now: when I was 14, it started with bulimia and was bad for a couple of years. I relapsed after a few good years, where it manifested as atypical anorexia: now I would tentatively say that I’m currently in a recovery phase. I fit very much into a normal weight range and always have. Almost every time I tell somebody I have an eating disorder they tell me they never would have guessed, and that’s the point: an eating disorder is an insanely private, individual experience, and half of the battle is making sure nobody knows, so that you can continue doing what you do in privacy. An eating disorder is not about broadcasting your thinness to the world; nor is it a diet gone wrong. Quite often, eating disorders are about regaining control for individuals who feel a lack of it in other domains of their life. The weight loss is a paradigm to fit on top of that need for control: even on my worst days, I would feel grounded because I could restrict what was going into my body, I could say no and I could work towards thinness, the pseudo-goal I had conjured in my mind to distract from the rest of my mental devices crumbling around me.

They are utterly consuming, clingy things. The mental restructuring one undergoes in treatment for an eating disorder is often likened to detoxing from a drug, except ex-addicts don’t find themselves face to face with their drug of choice five times a day, every day, for the rest of their lives. That is probably the best way to think about an eating disorder, at least for me – it’s an extremely addicting process, all that bingeing and purging and restricting and over-exercising and thinking up new ways to keep it from the ones that you love. Trying to move away from it, and create an entirely new paradigm for food, eating, weight and body image at the same time, is bloody fucking difficult.

Relapse is extremely common – again, I’m going to go with a drug analogy here: you know how in NA, people consider themselves an addict even if they’ve been clean for decades? I’ve found it easier to just refer to myself as having an eating disorder, rather than giving myself the inevitably-crushed pedestal status of ‘fully recovered’. My default mode for stress is to cope by focusing my energy on my body, weight and energy intake: when I’m losing control elsewhere, I try to regain the sense of it with my body. I never knew that this ‘default mode’ for coping with anxiety, depression or stress even existed, or that it was common in eating disorders. For some of us, we are never fully out of the woods with regards to our eating disorders, and it’s entirely possible for it to return after decades without one, and for your diagnosis to oscillate over the lifetime.

I never sought help when all of this first started, so I wasn’t to know. The only frame of reference for eating disorders I had as a kid that I can recall was Rudine Howard, the woman with severe anorexia I’d seen on Oprah when I was a preteen. Rudine cried at the idea of eating bread and would go on to die after almost 20 years spent in the grips of her eating disorder. When I started engaging in disordered behaviours and eventually began throwing up my food, I knew that it was a sign of something bad, but for years I repeated the same mantra: it’s not bad enough. This mantra was what kept me from seeking treatment until nine years after my eating disorder first started; by the time I did, I was barely eating and would often cry in the work toilets after eating a snack-sized chocolate bar.

Seeking professional help was so important, and so were my parents and partner. They made a concerted effort to educate themselves since I told them that I was going through a relapse. I can tell that they did some constructive Googling that led them to information about how to interact with somebody with an eating disorder from a conversational perspective. No longer am I faced with compliments about how thin or toned I look, or how much weight I’ve lost: there’s a new dialogue now about how strong I am, how healthy I look, how I’m working hard at my recovery and that this makes them proud. I could tell that it was awkward for them at first, but now it’s become second-nature, and for this I am grateful: they’re reinforcing that family is a place where I can escape the aesthetic-obsessed society in which we live, and that I can have control over the frame of reference applied to my body in a world that values thinness.

Reflecting on all of this, the thing that stuck with the most was one the first things my psychologist ever said to me: you don’t have to wait until it gets worse to get better.

If you, or somebody you know, is experiencing problems with eating, contact The Butterfly Foundation for support on 1800 ED HOPE (33 4673) or access their secure web counselling service HERE.